Author: Chris Sanchez

Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Post author By Chris Sanchez
Post date January 21, 2025
No Comments on Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

January 21, 2025

Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Krystal, a 42-year-old mother from Georgia, shares her journey after being diagnosed with Stage 4 IgM kappa multiple myeloma in June 2022. Before her diagnosis, she experienced troubling symptoms like tachycardia, shoulder pain, and shortness of breath, but initially dismissed them as effects of aging, weight gain, and other factors. A critical moment arose when she felt a severe pain in her back, leading to an urgent care visit, where she learned it might be cancer. Her 2 daughters were present during the devastating diagnosis.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Krystal emphasizes the importance of self-advocacy in navigating cancer treatment. Initially overwhelmed, she grew to actively participate in her care, seeking multiple opinions and eventually finding a team that communicated effectively and monitored her condition closely. She initially underwent chemotherapy and a bone marrow transplant, which provided temporary relief. However, persistent relapses led her to pursue CAR T-cell therapy, a promising avenue that has since improved her condition.

The journey has strengthened Krystal’s bond with her daughters, who have been her caretakers and constant support. She highlights the mental health challenges accompanying cancer, advocating for therapy and open communication. Despite the physical and emotional toll, she leans on her faith and resilience to maintain a hopeful outlook.

Community support plays a pivotal role in Krystal’s coping mechanism. Family, friends, colleagues, and online connections have provided essential emotional and practical support, allowing her to manage daily life and medical responsibilities. While acknowledging she is no longer the person she once was, she embraces her new reality and encourages others facing similar challenges to advocate for themselves, accept help, and stay encouraged. Her story is one of perseverance, faith, and the transformative power of love and community.

Name:
- Krystal S.
Diagnosis:
- IgM kappa multiple myeloma
Staging:
- Stage 4
Initial Symptoms:
- Back and shoulder pain
- Tachycardia
- Heart palpitations
- Shortness of breath
- Loss of appetite
- Fatigue
- Malaise
Treatments:
- Chemotherapy
- Bone marrow transplant
- CAR T-cell therapy

Thank you to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Pre-diagnosis
Reaction to the diagnosis
Finding the best care
The importance of self-advocacy
Treatment plan for IgM kappa multiple myeloma
Her motivation
Her mindset
Creating community
Her life right now
What Krystal wants to share
More Multiple Myeloma Stories

… as hard as myeloma is, you can still come out of it and still rock it.

Introduction

Hi, my name is Krystal. I currently reside in Georgia. I am 42 years old. I was diagnosed with IgM kappa Multiple Myeloma in June 2022.

I am a mother of two beautiful young adult daughters. I am an accountant. I love light hiking, walking on trails, parks, painting, and just spending time with family when I can.

Pre-diagnosis

Before I got diagnosed with multiple myeloma, I was having tachycardia, shoulder pains, heart palpitations, shortness of breath, nausea, loss of appetite, and back pain. My resting heart rate was at 130 beats per minute, which is not normal at all. And these things were not getting better with over-the-counter medicine.

I was also experiencing some weird pop-like sensations. After I felt the first pop, which was on the right side of my chest area, I went to the doctor and they told me that I had probably pulled a muscle. They did do a chest x ray, but that was clear. And after that, the shortness of breath progressively got worse, as well as the heart palpitations.

I went to the doctor again in probably the second week of June 2022, and I got an EKG done. It was normal sinus. And then the next day, I felt another pop, this time on the left side of my chest area. I didn’t go to the doctor because of the diagnosis last time.

About a week after that, I felt and heard a really loud pop in my back and fell to the ground in excruciating pain. Later on that evening, I ended up going to urgent care and they did a bunch of tests and scans. That’s when they told me that it looked like cancer. I was finally diagnosed with multiple myeloma in June 2022.

I just couldn’t put my finger on what was happening to me. I would blame it on things like my age, the fact that I had gained weight, and so on. It was just extremely frustrating because I didn’t have any answers and I couldn’t figure it out. But never in a million years would I have thought it was cancer.

Reaction to the diagnosis

When I heard that, looking back, the first word that comes to mind is devastation. We cried so hard that day. It was just unbelievable. And it really felt surreal — this can’t be happening. There is no way that I have cancer.

My daughters were with me at that time. We were just heartbroken. I think I blanked out at that point, and I don’t really remember anything else until one of the days I was in the hospital.

There was so much I had to learn. I have extensive bone damage, including lesions literally all over my body from the skull, all the way down. So I was confused — how is it a blood cancer? You’re talking about my bones all the time. They did explain it, but there was just a lot going on.

But the doctors really did educate me. And then I was overly consumed with trying to learn about multiple myeloma and read and do my own research.

Finding the best care

I saw a doctor while I was in the hospital, and she is still currently my oncologist. I did also see a multiple myeloma specialist, which is something that other multiple myeloma patients should also consider doing. So I had that team of doctors to support me.

However, that team was not the best. I just feel like the communication wasn’t there, and I really feel like they dropped the ball with me. I also don’t think they were monitoring me as closely as I needed them to.

So now I see another specialist, and this team is awesome. They are really on top of things. I’m getting blood work, bone marrow biopsies, and bone surveys, which are X-rays.

Also, the communication is great. They have different numbers that I can call anytime and I can ask them as many questions as I want. They will call me back. I’m always going to get an answer. If they don’t know something, they’re going to figure it out.

They’re also making sure to monitor me. Right now, it’s not as often as before, when it was as often as every day, even on weekends and holidays.

The importance of self-advocacy

I think self-advocacy is one of the most important things that you can have when you’re dealing with cancer. In the beginning, I was so scared. I didn’t know what was going on. And so I was just going with the flow. But I’ve been in the game for a couple of years now, and so I’m asking all the questions.

You just have to speak up. I mean, let the doctors know how you feel. If you don’t want to do something, let them know and discuss it with them. And maybe there are other options. They should be talking to you about those things.

It’s your body and it’s your life, and you deserve the best. I mean, it is so hard going through this, and you need to have a team that you feel like is for you, and who’s going to support you no matter what.

I’ve talked to my specialist about getting the vaccines again. I’m on the fence about that. And she said, that’s okay. If you don’t want to, you don’t have to. She explained to me, it’s about exposure and you might have to do some lifestyle changes, but if you don’t want to, you don’t have to. And I love that.

Definitely speak up. I know, sometimes it can be intimidating, but you just have to. You’ll get used to it.

I keep going and fighting because I love life and I want to be here.

Treatment plan for IgM kappa multiple myeloma

Chemotherapy

I first started intravenous chemotherapy in August 2022. Initially, I would have to go twice a week for that IV chemo, and each session took about 4 hours or so. I wasn’t doing well in the beginning, so I did pills as well, daily for 21 days and then off for a week.

I didn’t feel really bad. I mean, I was sleepy because I had pre meds. And then after the second treatment, I was starting to feel better. And so then after that, I just got better and better.

However, I ended up relapsing at least 2 or 3 times. And usually when I relapse, I know something’s going on. My body just feels prickly and I get a little achy. And the fatigue gets a lot worse. That’s how I know — oh, something’s happening.

Bone marrow transplant

I had my bone marrow transplant on February 28th, 2023. I would say that the procedure itself is simple; everything before the transplant, as well as the recovery, is all the work.

So beforehand, I got a large dose of chemo and that made me really fatigued. I also experienced nausea, mild vomiting, and diarrhea. And then I got my transplant, which took just 10 minutes and I felt fine immediately afterwards.

After the procedure, you just build up strength. You go through a basement period where you really, really feel bad, where your immune system plummets down to nothing. And then it ramps up.

It took me about 2 weeks before I felt better. And then that’s how long you’re usually in the hospital, or at least it was for me.

But after my bone marrow transplant, I quickly relapsed. The bone marrow transplant ended up lasting me maybe 2 or 3 months at the most. And the old specialist that I had didn’t have a plan, and so my oncologist was trying to figure out what to do next. That’s where I feel they dropped the ball. The myeloma had gotten out of control, and then finally I started another chemo regimen.

And that is when I started seeing the new specialist, and she told me, since the bone marrow transplant did not work for you, you need to do CAR T if you relapse again. And so we had a plan. So when I was in the hospital for that month, it was so I would stabilize in order to get CAR T.

CAR T-cell therapy

Just like with a bone marrow transplant, there’s a lot of stuff that you have to do prior to getting CAR T. There are so many appointments and so many tests. And then finally you get to the CAR T procedure itself.

I had my CAR T procedure on September 3, 2024. It took me maybe only 15 minutes. As an aside, it tasted and smelled like tomatoes to me, and they say it can taste like tomatoes or creamed corn for some people.

After CAR T, my body would feel sore, but other than that I would be feeling fine.

I’m done now with CAR T and I’m feeling good.

It’s not my time to go yet. I am too young.
So I have to fight and get through it.

Her motivation

I keep going and fighting because I love life and I want to be here.

I have 2 beautiful daughters that I want to be here with. It’s not my time to go yet. I am too young. So I have to fight and get through it.

People probably wouldn’t believe me if I were I tell them all the things that have happened. But yeah, I’ve gone through them. I’m a resilient person, and I’m truly blessed. And I’m thankful that I’m here and I’m going to keep fighting.

My daughters are amazing. They have taken care of me throughout this whole time. They literally stopped their lives to take care of me, and I just appreciate them so much. We’ve gotten a lot closer, and we were already close. But, you know, this brings a better bond. Because they are with me every step of the way. And they’re my cheerleaders.

My girls have gone through a lot. It’s [a parent’s IgM kappa Multiple Myeloma diagnosis] mentally draining on them as well. But they handle it well. They rely and lean on each other a lot. We definitely keep the communication going. I’ve had them in therapy. We just keep praying and just try to keep positive.

Her mindset

I haven’t been diagnosed with multiple myeloma that long, I’m going on 3 years. Having relapses as often as I have had is tough, but I have to keep going.

Mental health, I think, is a huge factor. I don’t think it gets discussed enough. I think anybody that has a cancer diagnosis, and maybe their family too, would need to speak with somebody. I will be honest. I haven’t talked to a therapist as much as I would like to, but I have seen one, and it absolutely helps.

I also try not to stay in a negative mindset. I mean, I allow myself to feel all the feelings. They are valid. I’m frustrated, angry, sad, and I do get depressed sometimes. Though I allow myself to be in those feelings, I try not to stay there that long. You have to come up out of it and just get through it. And, really, it’s a day by day thing.

I’m never going to be the same person I was before all this happened. Not ever again.
But it’s okay.

Creating community

Community is so important. You need to have a support system, or you would just be a mess.

I have lots of support from my daughters, my mother, my friends, my family, my coworkers. Without that support system, I don’t know how I would have survived.

People want to help, and there are a lot of good people out there in the world. The little things count so much and are so helpful. I’ve had people bring us groceries or just bring us a meal, come down to visit and clean the house or whatever. That is super helpful.

Coworkers have given me leave donations, and that has been such a blessing, to be able to still pay the bills even though I’ve been in and out of work.

I’ve done online chats and connected with people on Tiktok. That helps. Because just meeting people living with the same thing as you is just really heartening. It really has been almost therapeutic. Because it felt like I found my people.

Her life right now

I’m never going to be the same person I was before all this happened. Not ever again. But it’s okay.

It is hard. You know, you think back sometimes — oh, man, I used to be able to do this or that, or, I used to be so lively — that’s no longer the case. It’s hard and it’s definitely challenging. It takes time to get used to.

But I feel like you’ll be fine once you get to that point where you realize and accept that you’re no longer that person you used to be, but you’re just a different version of that person. I’m still the old Krystal, but I’ve just had to tweak some things.

It did take me a while, though, you know? And even now, I’m kind of hard on myself, so just giving myself grace, learning how to do that.

My biggest piece of advice is to stay encouraged.

I always feel like multiple myeloma has taken literally everything from me.

It’s taken my vision. At one point, I couldn’t walk. I was using a wheelchair. I was in excruciating pain. I’ve had strokes. I’ve had everything. But I’ve come out of it like nothing ever happened.

Hope is a good word. Yes, I hope for the best. And I think I go more towards faith. My faith has gotten stronger during all of this. And that is really what I hold on to.

My biggest piece of advice is to stay encouraged. It is going to be so rough at times. You’re going to feel waves of emotions. It will be like a rollercoaster. But just stay encouraged. Speak up and ask all the questions. Be your own advocate. Accept help. You’re going to need that support from others, and you will be surprised at how many people really want to help you and will support you throughout all of this.

So as hard as IgM kappa multiple myeloma is, you can still come out of it and still rock it.

Special thanks again to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Krystal!

Inspired by Krystal's story?

Share your story, too!

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Emily’s journey began with unexplained symptoms, including prolonged sickness, speech changes, and an inability to stick her tongue out straight. Initially, doctors misdiagnosed her with Eagle syndrome and anxiety. She also experienced night sweats, petechiae, and severe weakness, but struggled to find a diagnosis until an ENT referred her to palliative care, urging immediate action.

Emily visited the ER, where specialists quickly recognized the severity of her condition. A lymph node biopsy confirmed stage 4 Burkitt lymphoma, affecting her bone marrow, spleen, and central nervous system. She was also found to have hemophagocytic lymphohistiocytosis (HLH).

Emily began aggressive treatment involving 6 rounds of chemotherapy. Chemotherapy caused severe side effects, including mucositis, rapid weight loss, and extreme fatigue. Despite the challenges, Emily remained determined, knowing the transplant could cure both her cancer and HLH.

In May 2023, Emily underwent an autologous stem cell transplant. Afterwards, she endured an intense isolation period, followed by extensive physical therapy to regain strength and mobility. By August, scans confirmed remission, yet Emily found survivorship mentally and emotionally taxing. Returning to her job in special education only 4-5 months post-transplant proved difficult, as her immune system remained compromised. She continues to manage her health with frequent medical appointments, immunotherapy, and physical recovery.

Emily’s journey was not without complications. For instance, she suffered a small stroke during treatment, caused by an oversight in managing her blood thinners. Despite the challenges she faced, she emphasizes the crucial role of self-advocacy, community support, and compassionate medical professionals, particularly her nurses, who provided emotional and practical support during her hospitalization.

Emily actively raises awareness about young adults facing late or misdiagnoses, stressing the need for better medical attention for this demographic. She also highlights the impact of genetic factors and Epstein-Barr virus on her cancer, urging the importance of thorough family history and testing.

Now, Emily finds healing through therapy, volunteering at an animal shelter, and reintroducing physical activity. She plans to explore trauma-focused therapies like eye movement desensitization and reprocessing (EMDR) therapy and continues to engage with online communities for support, including on Instagram. While the fear of relapse lingers, Emily focuses on building a new normal and empowering others to advocate for their health and seek community connections during and after treatment.

Name:
- Emily S.
Age at Diagnosis:
- 28
Diagnosis:
- Burkitt non-Hodgkin lymphoma
Staging:
- Stage 4
Initial Symptoms:
- Constant fatigue
- Tongue deviated to the left
- Abscess in right breast
- Petechiae on legs
- Night sweats
- Nausea and vomiting
- Persistent cough
Treatment:
- Chemotherapy
- Stem cell transplant
- Immunotherapy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Emily!

Inspired by Emily's story?

Share your story, too!

Whether you’re a patient, care partner/giver, or someone interested in learning about bladder cancer, our goal is that these stories of bravery and resolve of those facing bladder cancer will increase awareness and break down myths. Most importantly, we hope you learn the importance of self-advocacy in your own healthcare.

Thank you to Pfizer and Astellas for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fights, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.

From Recurrent UTIs to Bladder Cancer: Monica’s Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Table of Contents

Introduction
Initial Symptoms
What the UTIs Felt Like
Getting a Bladder Cancer Diagnosis
Finding the Right Doctor
Multiple Recurrences and Successful Treatment
Follow-ups
How Bladder Cancer Changed Her Life
What Support Looks Like to Her
Redefining Her Identity
Raising Awareness: What Monica Wants People to Know About Bladder Cancer
Words of Advice

Introduction

Monica began her battle with bladder cancer in 2004 after experiencing recurrent UTIs and finding a lump during a routine checkup. Her proactive gynecologist referred her for an ultrasound, leading to a diagnosis of non-invasive bladder cancer. She faced emotional challenges with initial medical communication, but found a supportive urologist who helped her understand her condition. Rigorous treatment eventually stopped the cancer’s recurrence. She now undergoes annual checkups, managing anxiety and her weakened bladder.

Monica receives immense support from loved ones and the cancer community, which empowers her to share her story and inspire others. Her experience taught her to live fully, shifting from survival to thriving with purpose and resilience. She advises engaging with healthcare providers and staying positive, emphasizing the importance of being proactive and resilient in navigating cancer, thus offering hope and encouragement to others facing similar challenges.

I was getting recurrent urinary tract infections (UTIs) and those were the only times I would see blood in my urine

I was diagnosed with non-invasive bladder cancer in 2004.

I currently reside in Virginia. I enjoy spending time with my husband. We celebrated our 25th wedding anniversary in June 2024. We love to travel, go to the beach, and enjoy living life every day to its fullest.

Initial Symptoms

At the time, I had no symptoms that raised a red flag. I was getting recurrent urinary tract infections (UTIs) and those were the only times I would see blood in my urine, which is one of the signs of bladder cancer to be on the lookout for. I would get an infection, take an antibiotic, and it would go away, but it would come back again.

On one particular year though, I was going in to have my annual pap smear and doing that examination. The gynecologist felt something that she thought was over my reproductive area. She said, “I feel a lump or something there. I’m going to send you to get an ultrasound.” When I got the results, she told me that there was something in my bladder and referred me to a urologist.

I went to the urologist. The appointments and follow-up, getting a diagnosis, and getting the results back probably took a month and a half to two months. The urologist did a cystoscope and said there was something there, so they had to do TURBT, which is a transurethral resection of a bladder tumor. After the procedure, they told me that I had bladder cancer.

I like knowing more of the signs and symptoms and being more cognitive. If you see some of those things, it doesn’t necessarily mean that you have bladder cancer, but it will raise a red flag to say you need to have further testing to know what’s going on. Build your awareness and be proactive.

Pay attention if you have urinary urgency, burning sensation, pain, or if you see any hint of blood… Those are symptoms that should raise a red flag.

What the UTIs Felt Like

My UTIs were very, very painful. Almost indescribably so. The pain would go away with antibiotics, but a few months later, it would come back again. Pay attention if you have urinary urgency, burning sensation, pain, or if you see any hint of blood. I’ve heard people say they saw a drop and that was it, and they didn’t pay attention to it. Those are symptoms that should raise a red flag.

I thought, “What’s going on? What’s wrong with me? Why does this keep happening?” I was drinking water, trying to flush my system out, and I didn’t understand. Nothing was adding up. I was relieved when the doctor said something was in my bladder, even though I never thought it would be cancer. It was a relief to finally find out what was going on and the reason behind what was happening leading up to the diagnosis. I’m forever thankful to the gynecologist for taking the extra step to do the ultrasound.

Getting a Bladder Cancer Diagnosis

The day I learned I had cancer was an emotional roller coaster. It taught me the importance of advocating for myself.

My urologist at the time came in, told me that I had bladder cancer, and walked out of the room with no explanation. I sat there crying because I was very emotional. His nurse then came in and said, “We need to schedule you to have this done and that done.” I was shocked. It took me a while to gather myself to even drive home. I ended up getting another urologist because we were not on the same page.

I went online because I had never heard of this type of cancer. I found a lot of information, which was overwhelming. I didn’t fit any of the criteria of someone who would typically get bladder cancer.

I also didn’t see a lot of support groups in my area, which was a little concerning. We kept researching until I found an organization that specifically dealt with bladder cancer, bladder cancer patients, and caregivers. I linked up with that organization and continued to educate myself, my family, and my community.

He talked to my husband and explained in great detail what would happen, the treatment plan, and what we would do for surveillance. I was so happy to find the right doctor for me.

Finding the Right Doctor

I was undergoing checkups every 3 months, but when it would get close to that point, the nurse would call and say, “Oh, he’s not available on your scheduled appointment. Can you come next week?” This started happening repetitively. Every 3 months when I went back, the bladder cancer was back, so I didn’t want to go every 4 to 6 months. I wanted to stick to the 3-month schedule and not a day over.

I called the urology center and said, “I need someone else who’s going to be more attentive, on schedule, and has my best interests at heart.” They directed me to someone else and he’s who I’ve had since then.

We fit. He has a great bedside manner. He draws pictures to help me better understand the terms they throw out. He talked to my husband and explained in great detail what would happen, the treatment plan, and what we would do for surveillance. I was so happy to find the right doctor for me.

Multiple Recurrences and Successful Treatment

I would get a recurrence probably every 3 months between the first and the fifth year. Even though it was low-grade, non-invasive, and didn’t penetrate through my bladder, it was very aggressive.

They started a different type of treatment for which I had to go in every Thursday. I would get a catheter, get the drug injected into the catheter, and then I had to hold it in my bladder for 2 hours. When I went home, I had to rotate every 15 minutes for up to 2 hours and then let it out. I never understood this, but those were the instructions, so I followed them.

I did a series of those treatments for a couple of months. I never had a recurrence after that, thankfully.

My bladder is very weak and I’m not able to hold my urine, so when I go anywhere, I scope out every location to make sure there’s a bathroom nearby.

Follow-ups

I’m on annual surveillance so I go in for a check-up once a year. The doctor does a scan from my waist down and a cystoscope. Then we go from there. That’s pretty much what it’s been like for the last several years.

It’s still nerve-wracking. They call it scanxiety. You’re sitting there wondering if he will find anything or if something will show up. I still get a little anxious when I go to those appointments. But this is something that I have to deal with because I have to be under surveillance for the rest of my life.

How Bladder Cancer Changed Her Life

The biggest thing for me is not having a fully functioning bladder. My bladder is very weak and I’m not able to hold my urine, so when I go anywhere, I scope out every location to make sure there’s a bathroom nearby.

For everyone else on this journey, it’s the same thing for all of us. We’re always looking for the restrooms. I’m very cautious about what I drink. I tend to avoid things that will make me go more frequently, like caffeine. I mostly drink water or green tea.

I was in survival mode but I shifted to “thrival” mode. I learned to not only survive but also to thrive, even with a bladder cancer journey.

What Support Looks Like to Her

I’m so thankful for my husband. He’s been there the whole time. He’s walked with me every step of the way. My family, friends, and church family have been so supportive as well.

I also have a cancer support group with women of all different types of cancer. I also belong to an advocacy network that focuses on bladder cancer awareness. All of those sources of support keep me well-rounded. It helps me to share my story and, my journey with bladder cancer with the hope that it will help someone else in this situation.

Redefining Her Identity

There was definitely a shift due to my experience. I’ve always enjoyed traveling and relaxing but that wasn’t a priority. Now, I take advantage of that, whether meeting up with my family for the holidays or getting together to talk. I cherish and take advantage of those moments.

I try to live every day to its fullest and not take anything for granted. I still live life, but it was a shift. Now, my mindset is, “Let’s do this.” I was in survival mode but I shifted to “thrival” mode. I learned to not only survive but also to thrive, even with a bladder cancer journey.

Even though you’re going to go through some hills and valleys, continue to stay positive, keep the faith, and trust the process.

Raising Awareness: What Monica Wants People to Know About Bladder Cancer

Before, I thought that hearing “cancer” was a death sentence. It’s going to be over. But you need to change your mindset and believe that everything’s going to be okay, even though you might have those times when you feel that it isn’t.

Keep moving forward, stay positive, and do things that make you happy. I love to walk. I like to journal to clear my head. When things were getting a little difficult for me to handle, I sought therapy to help me get through those tough times. It’s a lot to deal with and it can be overwhelming. Sometimes you need to reach out to get additional help.

In the beginning, I did ask: why me? Then it shifted to: why not me? I feel like we all have a plan and purpose for our lives, and this was the plan and purpose for me, even though no one wants to be a part of that club and be diagnosed with cancer.

There have been a lot of silver linings with being diagnosed, like meeting some wonderful people who have become my extended family. We’ve walked through these journeys, cried, and supported one another. I continue to share my story. I hope to give somebody the hope that they’re not alone, that there is help out there, and that they can get through it.

Words of Advice

Sometimes, I think people are afraid to ask their doctors questions. But it’s your life and your body. Be more confident and bold to ask what you need to ask. Bring up your concerns about whatever treatment plan or information that you may have.

If you are unfortunately diagnosed with bladder cancer, you’re not alone. Find a support group. Find a doctor who matches what you’re looking for. Even though you’re going to go through some hills and valleys, continue to stay positive, keep the faith, and trust the process.

Special thanks again to Pfizer and Astellas for supporting our patient education program! The Patient Story retains full editorial control over all content.

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Tiffany’s Stage 4 Liver Cancer Story

Post author By Chris Sanchez
Post date January 16, 2025
No Comments on Tiffany’s Stage 4 Liver Cancer Story

January 16, 2025

Tiffany’s Stage 4 Liver Cancer Story

Tiffany, a 38-year-old mother of 4, has stage 4 bile duct cancer or cholangiocarcinoma, also known as liver cancer. In April 2024, she experienced severe left flank pain, which led her to seek medical attention. A CT scan at the hospital revealed a mass on her liver, initially suspected to be colon cancer. Further tests, including an MRI, PET scan, and liver biopsy, confirmed the diagnosis of cholangiocarcinoma that had spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Following the diagnosis, Tiffany began receiving treatment. Her oncologist initiated a combination of chemotherapy and immunotherapy, alternating between therapies weekly, with a rest period every 3 weeks. Despite initial radiation treatments failing to shrink the tumor on her spine, targeted radiation was applied to her liver, followed by spine surgery to remove most of the tumor. Recovery was challenging, requiring a week-long hospital stay, physical therapy, and the use of a walker and cane at home.

Subsequent treatment involved ablation surgery to address new lesions on her liver. Tiffany resumed chemotherapy and immunotherapy, experiencing side effects such as back pain, headaches, and nausea. As her treatment continued, she received support from her medical team, including a liver specialist in Baltimore.

Mentally, Tiffany struggles with anxiety and the fear of leaving her family. She takes anxiety medication to help cope, though the emotional toll remains significant. She stresses the importance of self-advocacy, sharing her story to raise awareness about cholangiocarcinoma and stressing the importance of regular medical check-ups.

The ongoing battle with cancer challenges Tiffany physically and emotionally, but she remains determined to see her children grow up. Her story serves as a reminder to pay attention to one’s health and advocate strongly for oneself in the face of medical challenges.

Name:
- Tiffany J.
Age at Diagnosis:
- 38
Diagnosis:
- Liver cancer (cholangiocarcinoma)
Staging:
- Stage 4
Initial Symptoms:
- Left flank pain
Treatment:
- Radiation
- Chemotherapy
- Surgery

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

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Amy’s story began with a routine colonoscopy in February 2023, during which doctors discovered a small bulge in her appendix. Although it was initially deemed non-threatening, a follow-up CT scan revealed appendiceal nuclei, prompting her to undergo an appendectomy in April 2023. Though the procedure appeared to be successful, Amy anxiously awaited the pathology results.

Soon afterwards, Amy learned she had appendix cancer, the same rare condition her sister-in-law had been diagnosed with, leading her to Memorial Sloan Ketterin g in New York City. As she adapted to this unexpected turn, Amy sought support through a Facebook group for appendix cancer patients. There, she discovered the rarity and complexity of her condition, often misdiagnosed as ovarian cancer among women.

At Memorial Sloan Kettering, Amy underwent a significant surgery in June 2023. Her slow-growing cancer meant she did not receive the CRS-HIPEC treatment, common for appendix cancer. Fortunately, her prognosis was better than her sister-in-law’s due to differences in pathology. Her PCI score, used to assess cancer spread in the abdomen, was a low 3, indicating minimal spread (scores range from 1-39, PSOGI).

Amy now faces regular scans every few months to monitor her condition. Her outlook on life has shifted, embracing her present rather than fearing an uncertain future. Despite being at stage 4, Amy remains positive, focusing on living without fear while cherishing smaller joys.

Amy advocates for listening to one’s body and acting promptly on health concerns, emphasizing that time is crucial with cancer diagnoses. Her experience underscores the importance of thorough research, finding emotional support, and demanding the necessary care, like physical therapy, to maintain quality of life. Her journey highlights resilience in the face of rare cancer, stressing the importance of early detection and proactive health management.

Name:
- Amy M.
Age at Diagnosis:
- 51
Diagnosis:
- Appendix cancer (low-grade appendiceal mucinous neoplasm [LAMN])
Staging:
- Stage 4
Initial Symptoms:
- Irritable bowel syndrome
Treatment:
- Surgery (appendectomy)

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Amy!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

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Jill’s EGFR Non-Small Cell Lung Cancer Story

Jill F., a dedicated lung cancer advocate from Chicago, discusses her unique journey shaped by profound personal loss and her subsequent diagnosis. Her story begins in her youth, with the tragic loss of her grandparents, father, mother, and aunt to cancer, all within a relatively short time frame. This significant impact inspired Jill to advocate for lung cancer research and early detection even before her own diagnosis, including through assuming leadership roles at the LUNGevity Foundation.

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez

In 2009, doctors diagnosed Jill with stage 1A lung cancer during routine surveillance she had pursued due to her family’s history. Her EGFR-positive status allowed her to benefit from targeted therapies, and she highlights the critical role of biomarker testing in personalized cancer care. Her cancer responded to the treatment, but returned some years later.

Jill emphasizes the stigma surrounding lung cancer, often tied to assumptions about smoking. She argues that such misconceptions detract from providing patients and families with proper support and compassion. Her advocacy aims to shift the narrative and ensure that every patient receives understanding, regardless of their history.

Jill underscores the importance of building trust and empathy between medical professionals and patients, advocating for clear and compassionate communication throughout the diagnostic and treatment journey. Her advocacy extends beyond her diagnosis. She continues to educate others, including on social media, about lung cancer screening and the advancements in treatment that save lives. Jill believes that empowering patients with knowledge about biomarker testing can help them make informed decisions and feel more in control during a challenging time.

Jill’s personal life remains a source of joy and motivation. She cherishes time spent with family and friends, outdoor activities, traveling, and volunteering. She explores new hobbies and finds solace in giving back to the community that supported her.

Jill’s message focuses on hope, resilience, and the power of advocacy. She encourages others to confront stigma, share their stories, and lean on one another for strength. Her journey, intertwined with loss and triumph, illustrates the importance of raising awareness, fostering empathy, and supporting ongoing research for better treatment outcomes. Jill concludes by reminding listeners that every story holds power and that no one should face their journey alone.

Name:
- Jill F.
Age at Diagnosis:
- 39
Diagnosis:
- Non-small cell lung cancer with EGFR exon 19 deletion
Staging:
- Stage 1A
Symptoms:
- Nodule found during periodic scan
Treatments:
- Surgery
- Targeted therapy
- Radiation

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Jill!

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Jessica, from Abilene, TX, shares her journey after having been diagnosed with a rare form of pancreatic cancer — a solid pseudopapillary neoplasm.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Jessica’s symptoms began with persistent gastrointestinal discomfort, initially misdiagnosed as irritable bowel syndrome (IBS). In June 2024, severe abdominal pain led her to the ER, where imaging revealed inflammation in her pancreas. Follow-up tests discovered a 2.5 cm mass. A series of inconclusive biopsies led to a second procedure confirming a malignant, though typically non-cancerous, solid pseudopapillary neoplasm tumor, a diagnosis Jessica grappled with.

Jessica’s surgeon in Dallas recommended the Whipple procedure, involving removal of part of the pancreas, stomach, gallbladder, and small intestine. Surgery lasted 6 hours, followed by a week-long hospital stay marked by complications, from which she swiftly recovered due to her youth. Post-surgery, tests revealed clear lymph nodes, no metastasis, and a staging of 1B. Genetic testing ruled out hereditary links for her pancreatic cancer, attributing her condition to “bad luck.”

Jessica reflected on the mental toll of her experience, balancing her military career, family, and health challenges. She leaned on her husband and family for emotional support, embracing vulnerability and setting boundaries for her mental well-being. She also faced impostor syndrome, struggling with her comparatively “easier” journey.

Jessica’s post-surgery life includes regular bloodwork and scans to monitor nutrient absorption and detect recurrence. She highlights the importance of patient advocacy and early detection, emphasizing that her incidental diagnosis may have saved her life. She advocates for awareness of rare cancers and shares her story, including on her Instagram account, to inspire others to prioritize their health and validate their emotions during medical challenges.

Jessica’s message: cancer journeys differ, but all experiences are valid. She urges others to seek care for any symptom, however minor, and hopes that sharing her rare diagnosis raises awareness and empowers others to take control of their own health.

Name:
- Jessica B.
Age at Diagnosis:
- 26
Diagnosis:
- Pancreatic cancer (malignant solid pseudopapillary neoplasm (SPN) of the pancreas)
Staging:
- Stage 1B
Initial Symptoms:
- Upper abdominal pain
- Nausea
- Vomiting
Treatment:
- Surgery (Pancreaticoduodenectomy ((Whipple procedure))

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Jessica!

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Kyle and Rachel advise others in similar situations to hope, advocate, and seek the right team of doctors. Their story highlights resilience, with Kyle’s belief in his recovery driving them forward.

Name:
- Kyle O.
Age at Diagnosis:
- 26
Diagnosis:
- Brain cancer (glioblastoma)
Grade:
- Grade 4
Initial Symptoms:
- Trouble speaking (stuttering) and thinking properly (struggled to remember what certain words meant)
Treatment:
- Surgery (craniotomy)
- Chemotherapy
- Immunotherapy
- Radiation

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Brain Tumor Patient Stories

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Tags caregivers, recurrence

Chemotherapy Colon Colorectal Eloxatin (oxaliplatin) fluorouracil 5fu FOLFOX (folinic acid, fluorouracil, oxaliplatin) Panitumumab Patient Stories Surgery Treatments Xeloda (capecitabine)

Ken’s Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date January 6, 2025
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January 6, 2025

Ken’s Stage 4 Colon Cancer Story

Ken, 59, from Minnesota, shares his journey battling stage 4 colon cancer, which he was diagnosed with in October 2022. His life prior to diagnosis included an adventurous career as a meteorologist and storm chaser, followed by a long stint as a volunteer English teacher in the Himalayas. However, in 2020, the COVID-19 pandemic forced a change of plans, and he settled back in the U.S. with his family.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially, Ken ignored concerning symptoms like intermittent bowel changes and blood traces, attributing them to minor issues. His symptoms diversified and intensified in late 2022, with frequent fevers, weight loss, and fatigue. After visiting urgent care, he received a CT scan revealing thickening of the sigmoid colon and metastasis to his liver [making it a stage 4 colon cancer diagnosis]. His oncologist warned him that without treatment, his life expectancy was limited to under a year. Though chemotherapy was initiated promptly, Ken faced immediate complications, including endocarditis, which halted his treatment temporarily and required a PICC line and weeks of antibiotics. The chemotherapy’s side effects left him drained and underweight, sinking to his lowest point emotionally and physically by early 2023.

A critical moment came when Ken experienced an intestinal blockage. Doctors recommended palliative care and hospice, as his heart was too weak for surgery. However, Ken’s cousin, a liver specialist at MD Anderson, connected him to the Mayo Clinic, where surgeons conducted a life-saving colectomy and liver resection, removing 68% of his liver. This marked a turning point in his recovery, as he began to regain weight and strength.

In 2024, after successfully undergoing a heart valve replacement and prostate procedure, Ken faced new challenges as scans revealed minor cancer regrowth. His oncology team pursued aggressive treatments, including ablations for liver and lung spots, as well as new medications, all of which proved highly effective. Despite persistent health challenges and skin reactions, Ken’s latest scan in mid-July 2024 showed that his treatment was working remarkably well.

Throughout this ordeal, Ken’s faith and positive outlook and his strong support network of family and medical teams helped him navigate his complex diagnosis and treatment, underscoring his resilience and determination to overcome each new hurdle.

Name:
- Ken S.
Age at Diagnosis:
- 59
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Initial Symptoms:
- Intermittent appearance of blood in stool
- Occasional diarrhea
- Increase in bowel movement frequency
- Fevers and chills
- Fatigue
- Weight loss
Treatment:
- Chemotherapy
- Surgery